MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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AshleyS's picture
Replies 9
Last reply 5/28/2015 - 9:37am

I met with my docs at MD Anderson today to hear about my scans from yesterday. I made it through 3 of the 4 dual infusions (Yervoy & Opdivo). I got really sick and they took me out of the trial a few weeks ago. 

 
However.....it was all super good news today! 
 
I saw my dermatologist first - no new moles, etc. Actually, some of the moles on my body shrunk/lightened. 
 
Then I saw my melanoma specialist. All of the random tumors on my body are gone. My liver lesions have shrunk dramatically - I'd say, by looking at the pictures, by 80-90%. It was amazing to see!!!!!!!!!!!!!
 
Tonight I had a Yervoy infusion. Not the combo, just the Yervoy alone. We are leaving Texas this weekend and I'll start the Opdivo back in ND in 3 weeks. (My 2 year old is excited to sleep in her 'purple room.')
 
Ever since I found a mass in my groin at 20 weeks pregnant last July, I've received bad news from all my biopsies and scans. It feels great to get positive news! We are super happy tonight. :D
 
Ashley

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/27/2015 - 11:09pm
Replies by: Anonymous, Janner

Hi everyone.  I am a 30 year old male and I was recently diagnosed with stage 1b melanoma/ mitotic scale 2/ Clarke level 2/ no ulceration.  They did not do a SNLB because the mole was located in the upper center part of my back.  Anyways,  I feel like I want to do a SNLB but I don't know if it's possible since I am a month out of wide local excision.   Anyways, can they reopen me up and check the lymph nodes?  I would appreciate if anyone with a similar situation can put in their input.  Thanks- Mark

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yazziemac's picture
Replies 6
Last reply 5/28/2015 - 8:42am

Hi

I just wanted to update you that my husband, Pete, is receiving "hospice at home" care and that there is no longer any hope for treating his cancer.  It has spread through his cerebrospinal fluid and he has tumours everywhere.  He is currently on a pain pump and has ports to receive his other medications.  We have much support from our palliative care community at home and he is currently not in pain, although he sleeps the vast majority of the day.  We did everything we could to try to combat this beast, but it just wasn't possible.  At this point, I am praying for a merciful, quick passing for him.  He is paralysed from the waist down due to spinal tumours and I am hoping that he passes before the upper spine tumours cause him more complete immobilization.  Thankfully, he is quite lucid when he is awake, so we are able to communicate with him in a meaningful way. 

Yasmin

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Brian_D's picture
Replies 7
Last reply 5/28/2015 - 9:38am

I was originally diagnosed with stage III melanoma in March 2011.  Had a recurrence this past Setpember with a large brain MET.  I had a craniotomy and treated with Yervoy.  About a month ago we found mets in brain and lungs.  Started on Keytruda and had gamma knife radiation last week.

I am a young attorney and it is a stressfull job.  Although I am not experiencing any debilitating side effects at this time, it is taking an emotional toll on me.  I am having trouble concentrating and the stress can be overwhelming.  I want to get a sense of what is typical in this situation.  Should I plow ahead and do my best to work through this?  Should I consider taking some time off to concentrate on getting my mind and body right?  I would love to hear everyone's thoughts and personal experiences.

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eturner82's picture
Replies 5
Last reply 5/27/2015 - 6:44pm

Hi guys

On 5-5-15 my husband had a CT scan which showed progress and new bone mets and was taken off PD-1 his doctor was rushing all paper work and scans to NIH and they have been very fast to respond.... In the mean time he's been losing feeling in his legs and can not walk up steps..... I could not get him in the house on Friday so we called his doctor at UVA, he said bring him ASAP he is being admitted.... MRI shows a bone lesion in the area of left frontal area with meningeal contact..... As if that was not bad enough he also has melanoma in the spinal nerve roots.... No spinal tap has been done but in the MRI you can see it!!..... I NEED ADVICE, PLEASE HELP (and yes i've read the older posts on here about lepto)

Thank you

Emily

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Anonymous's picture
Anonymous
Replies 6
Last reply 5/28/2015 - 2:46am
Replies by: Anonymous, Janner, arthurjedi007

Hello everyone.
First of all forgive me for my bad English (its not my mother  but Spanish)
Since the diagnosis of my sister (Superficial spreading melanoma, stage 1A melanoma Breslow depth 0.6 mm, clark III) last year, there is no day in which I dont wake up or dream about it, the scared of a possible recurrence in the next months or years terrifies me.
I have been searching at the internet the odds of a possible recurrence. I have read many people with stage 1 become stage 3 or 4, according to statistics is very low probability, the vast majority are "cure", but always read these things happens, which is my greatest fear.
I suffer in the flesh every time I read some reviews of this kind, I know how hard it is or how bad it could be.
I have read many stage 2 or 3 dont receive any treatment, the interferon is contraindicated. I do not understand why is not possible to not use immunotherapy as used with patients of stage 4, there are evidences of effectiveness in most patients.
No reason why my sister had melanoma, no one in my family that I know has been diagnosed, she now lives in Germany, but we are from Cuba. My theory is that being in Cuba his body was adapted to the sun and produced the vitamin D3 that her body needs and when she moved to Alemnia where almost no sun did not produce this vitamin, and possible her immune system defenses go down and then appeared of the melanoma. Is it possible?
Another question, Is recommended to take vitamin d3, always use sunscreen and take other supplements such as green tea, CoQ10, IP6 Inositol, Omega3 etc?
Thank you very much to all and a lot of strength and encouragement for all.
Yuni

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casagrayson's picture
Replies 6
Last reply 5/27/2015 - 2:10pm
Replies by: Julie in SoCal, casagrayson, Janner, Anonymous

So,  my husband has had multiple primaries and I don't know a part of his body that hasn't been cut on to remove basal cell, recurrent basal cell, or squamous cancers.  The last derm check (4 months ago) was the first time in years that he didn't need any biopsies.  I had hoped we were out of the woods.  

Now, though, he's developed something I've never seen before.  It's about the size of a BB, color between a clear and pearly white, and hard.  It looks to be along an old incision scar, but honestly I couldn't tell you if he had something removed right there or not.  That popped up probably six weeks ago.  Now, it looks like there is an additional lump under the skin right beside it.  I've also notice some other spots on his face that look like nodules under the skin, abou the size of bb's.  I can't say too much to him about any of this because I found the primaries, not the doctor, so whenever I act concerned he gets really nervous.  

Please tell me that these don't sound like sub-q's, or nodular melanomas.  He does have another derm appointment at the end of June (he cancelled his last one because we were going on a vacation and he said "I just don't want to think about it").

Strength and Courage,

Susan

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/27/2015 - 1:11pm
Replies by: Anonymous, Andrew1725

I was recently diagnosed with melanoma.  They did a 1cm and think I am going to be fine.  It was found during my routine check.  After something like that you start to pay attention to everything.  I have a small mole like mark (slightly raised) that has been there for a few years.  Hasn't changed in color or shape or size (purplish). The dermatologist has seen it several times and told me I could keep it.  Don't want to be paranoid...want to take his advice.  Have to assume he knows what he is looking at.  Plus all that I read...you are looking for change.  True?

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BrianP's picture
Replies 1
Last reply 5/26/2015 - 9:08pm
Replies by: Mat

This seems really interesting.  Maybe this could be one of the first discoveries that enables more patients to respond to Anti-PD1

 

http://www.news-medical.net/news/20150512/Study-Disrupting-cancer-pathway-could-extend-benefits-of-new-immunity-boosting-drugs.aspx

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BrianP's picture
Replies 2
Last reply 5/26/2015 - 10:41pm
Replies by: Bubbles, Mat

Dr. Jeffrey Kirshner’s 2015 ASCO Abstract Recommendations—Melanoma

Written by
JeffreyJ.Kirshner 

Sunday May 31, 2015; 1:00 PM–4:00 PM

Plenary Session

LBA1 Efficacy and safety results from a phase III trial of nivolumab (NIVO) alone or combined with ipilimumab (IPI) versus IPI alone in treatment-naive patients (pts) with advanced melanoma (MEL) (CheckMate 067). Authors: JD Wolchok, V Chiarion-Sileni, R Gonzalez, et al

Take-Home Message

  • The paradigm for treating advanced melanoma has changed for the better in recent years. This plenary presentation should add some clarity in terms of initial treatment for metastatic melanoma.

Saturday May 30, 2015; 1:15 PM–4:15 PM

Oral Abstract Session

9001 Long term follow up of survival in a randomized trial of wide or narrow excision margins in high risk primary melanoma. Authors: AJ Hayes, L Maynard, RA'Hern, et al

Take-Home Message

  • A total of 900 patients with primary cutaneous melanoma ≥2 mm in Breslow thickness were randomized to a 1-cm excision (n = 453) or 3-cm (n = 447) excision. After a median of 8.8 years' follow-up, 494 patients died; 359 of the deaths were melanoma-related. The rate of melanoma-related death was 24% higher in those who received a 1-cm excision vs those who received a 3-cm excision.
  • This randomized trial of patients with melanomas ≥2 mm in depth has demonstrated an improvement in melanoma-specific mortality in addition to locoregional relapse with 3-cm excisions compared with 1-cm excisions and may very well lead to the recommendation of even wider margins for such patients.

LBA9002 Survival of SLNB-positive melanoma patients with and without complete lymph node dissection: A multicenter, randomized DECOG trial. Authors: U Leiter, R Stadler, C Mauch, et al

Take-Home Message

  • I am looking forward to this presentation. Results could lead to a change in the standard of care and possibly improved quality of life for these patients.

9003. Surveillance imaging with FDG-PET in the follow-up of melanoma patients at high risk of relapse. Authors: JH Lewin, A Sanelli, I Walpole, et al

Take-Home Message

  • In this study, 86 Australian patients with stage III melanoma were followed with serial FDG-PET scans, and 25 recurrences were found. The majority of the patients were asymptomatic, and 9 were able to undergo potentially curative surgery.
  • Although not yet a part of guidelines, this imaging modality should be considered in selected patients and may someday be a standard of care.

9004 Clinical response, progression-free survival (PFS), and safety in patients (pts) with advanced melanoma (MEL) receiving nivolumab (NIVO) combined with ipilimumab (IPI) vs IPI monotherapy in CheckMate 069 study. Authors: FS Hodi, MA Postow, JA Chesney, et al

Take-Home Message

  • In the CheckMate 069 trial, 142 patients with metastatic or unresectable melanoma were randomized 2:1 to receive ipilimumab plus nivolumab or ipilimumab monotherapy. Both objective response rate (60% vs 11%; P < .0001) and progression-free survival (8.9 months vs 4.7 months; P = .0012) significantly improved with the addition of nivolumab compared with ipilimumab monotherapy. While the safety profile was manageable, 51% of patients receiving ipilimumab plus nivolumab reported grade 3/4 drug-related adverse events compared with 20% of those receiving ipilimumab alone.
  • This is another important presentation in the saga of PD-1 inhibition, which may potentially change the standard of initial care for advanced melanoma. The combination led to a higher response rate and improvement in progression-free survival.

9005 Long-term efficacy of pembrolizumab (pembro; MK-3475) in a pooled analysis of 655 patients (pts) with advanced melanoma (MEL) enrolled in KEYNOTE-001. Authors: A Daud, A Ribas, C Robert, et al

Take-Home Message

  • In 342 ipilimumab-treated (IPI-T) and 313 ipilimumab-naïve (IPI-N) patients with metastatic melanoma, after receiving PD-1 inhibitor pembrolizumab, ORR was 34% (29% of IPI-T patients and 38% of IPI-N patients); CR rate was 6%. The 6-month progression-free survival (PFS) rate was 44% (41% in IPI-T patients and 47% in IPI-N patients), and the 12-month PFS rate was 34% (32% in IPI-T patients and 36% in IPI-N patients). Overall survival at 1 year was 67% (63% in IPI-T patients and 71% in IPI-N patients), and at 2 years was 50% (46% in IPI-T patients and 53% in IPI-N patients). Grade 3/4 treatment-related adverse events were reported in 14% of patients.
  • This PD-1 inhibitor was demonstrated to have robust and durable activity in patients with previous ipilimumab exposure and in previously untreated patients, with manageable toxicity.

 

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tmelanio's picture
Replies 13
Last reply 5/28/2015 - 8:24am

In great health at 67 and retired in the rural community of Nalcrest, Polk County, Florida, I chose the cheapest advantage plan I could find, saving over $300 a month over my previous plan which I suspended.  I can always go back or choose a better palan during open season.

Because my plan does not authorize routine skin check-ups, my PCP picked a random blemish to be checked out by a participating dermatologist.  On February 11, 2015, his nurse found a suspicious spot elsewhere on my right forearm.  I got a call right away that it was melanoma.  Oblivious, I thought nothing of it.

On March 2, I was shocked at how much the dermatologist cut away for such a small speck, but soon afterward I got a call that the margins were too small and that I had stage 2 melanoma.

The earliest available appointment was April 21 for one of only two oncology surgeons at the Lakeland Regional Cancer Center which is approved by the Commission on Cancer.  He said he would perform a wide excision and remove 2 lymph nodes.  The earliest he could do it was May 7.

My plan requires all testing to be routed through my PCP, a round-about way apparently foreign to everybody.  I personally had to play phone tag between the Cancer Center, my PCP, and health plan to clear up repeated miscommunications and misunderstandings before my pre-op testing was approved. Labcorp and ATR waiting rooms were full and obviously low income. 

Right up to the afternoon before my scheduled May 7 surgery, I was assured that I would get an automated call informing me of what time to show up.  Just after 5 PM I received the automated call informing me to check in 2 hours before my 2:05 PM surgery.

May 7, 10:30 AM, I received a call asking why I wasn't there for a 10:00 AM procedure for which a medical team was waiting.  When I told her about the automated call she apologized - a nurse was supposed to have called me.

My girlfriend, Julie, was told that she could accompany me every step of the way.  However, she was left in a room to which I was to return.  She was forgotten for over an hour and a half until a nurse came by and asked what she was doing in there.  She was told the surgery would last 2 hours so she went to the hospital cafeteria to eat.  The surgery was over in 40 minutes and she missed speaking personally with the surgeon.

Immediately before the surgery, a kid came by with some papers to sign.  I was hooked up on the gurney wearing nothing but the gown and of course I didn't have my glasses. On retrospect I believe it was giving him permission to insert the breathing tube for the anaesthesia.  Afterward I had a miserably raw throat and was coughing up gobs of green phlgm for 3 weeks. It hurt to swallow. I read online that this is preventable and is dependent upon the skill and technique of the anaesthetist.

The follow-up was on May 18 with a nurse practitioner in lieu of the vacationing surgeon.  She balked twice before answering my question.  Julie burst into tears when she said one of my lymph nodes tested positive.  I asked what next and she replied, "Chemo". I asked how much cancer was in the positive lymph node and after looking at her clipboard, replied, "I don't know". She reiterated the surgeon's assertion that he would take out all my lymph nodes should one test positive.  She prescribed a PET scan and brain MRI.  She scheduled my next appointment with her since the surgeon was fully booked for the month.  June 2 was chosen because he would be in a nearby wing and she might be able to get him to drop by.

Again I played phone tag trying to get approval for the PET scan.  May 21, on my way to the mobile unit, I received a call informing me that it would have to be rescheduled because it had not been approved yet. From my car I made a couple of calls clearing some blatant miscommunications before she called back with an Okay.

Yahoo! The PET scan is negative.  I would have not known until long after Memorial Day had I not called and insisted. However, I learned some perhaps dated info that PET scans have trouble detecting cancer that is less than 8 cm, which seems awfully big to me. How accurate are they?

Cancer.net states that the survival rate is the same for patients who elect not to have lymph nodes removed, and that because of this, many patients choose to leave them alone to avoid probable complications for life. Immunotherapy does not increase lifespan, and even with chemo and lymph node removal, recurrence is 27%.  Are there any stats for watch and wait?

Brain MRI scans are not available in Lakeland until the middle of June, so I am having one in Plant City May 28.  If that is negative also, am I considered NED?

I have gone cold turkey and removed sugar and processed foods from my diet.  Eating as much as I want, I now consume foods which strengthen the immune system and I am losing weight.

I feel like my June 2 appointment with the nurse is doc-in- the-box assembly line care.  I know I need a melanoma specialist. I am long registered to receive care from any Veteran's Hospital in the country. Open season to change plans is at year's end.

Any insight or advice would be sweet. Thank you.

 

 

 

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sharebear's picture
Replies 2
Last reply 5/27/2015 - 8:50pm
Replies by: Jydnew, dentholla

Husband had 4 year scan since his recurrence in 2011 and is NED.  He was diagnosed as stage 3(b) or 3(c) depending on the institution.  Although it is always in the back of our mind, it doesn't define us.  We live more appreciatively, laugh louder, empathize deeper, and play harder (we still work too).  Feeling optimistic with the recent medical advances in the melanoma field and wishing you all the best in your journey.

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I don't recall when I subscribed to this weekly email digest, but this week's installment had a couple of interesting articles.

Disclaimer (or as everybody loves to use at work these days: tl;dr): I didn't search Celeste's blog first, so she may already have written about these.

http://melanomanewstoday.com/2015/05/22/researchers-discover-melanoma-in...

Talks about the discovery of a pathway (WNT/beta-catenin) that inhibits T cells from entering a tumor. The article hypothesizes that patients lacking TIL cells do not benefit from immunotherapy as much as those with them. This opens the door for investigating how to block the WNT/beta-catenin pathway to let the TIL cells in.

The second, http://melanomanewstoday.com/2015/02/26/melanomas-addiction-to-glutamine..., talks about melanoma's need for glutamine to survive. They found that melanoma cells die without it.

- Paul.

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las630's picture
Replies 4
Last reply 5/26/2015 - 7:58pm
Replies by: las630, Bubbles, Toby0987

Good morning,

I had a mole removed from my leg about a week and 1/2 ago.  The dermatologist called me last week and said that it came back as malignant melanoma and that I needed to see a surgical oncologist.  I saw the surgical oncologist on Thursday and they said I need to have a wide excision and a SLN biopsy.  However, my surgery date is not until June 19th.  The waiting is kind of making me crazy!  :(

 

My path reports from the shave biopsy showed malignant melanoma, 1.2mm breslow thickness, positive ulceration, 2-3 mitoses per mm2.  Can anyone tell me the statistics of someone who ended up having lymph node involvement with this type of path report??

 

Thank you,

Lisa

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tcadwallader's picture
Replies 4
Last reply 5/26/2015 - 3:58pm
Replies by: malika, Anonymous, tcadwallader, _Paul_

I am new to this community but I am frantically searching for answers, reassurance, etc.  My 9 year old son has multiple moles on his back and neck.  They have all been checked by our pediatrican within the last year and have "looked good".  Within the last 9 months I have noticed a pink, raised mole that has rigid boarders and seems to be growing quickly on his back.  I took him to the dermatologist and they referred to it as an "ugly duckling" and recommended doing a shave biopsy right away.  I am worried sick and wondered if anyone else has had a similar experience?!?!?

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